A bit about cortisol levels etc

[Caroline2079]

I have never written a post but find this forum amazingly useful. There are some very knowledgeable folk around who are willing and able to give almost daily advice which is very sound and reassuring.

I would like to chip in if I may on the cortisol debate.

I have GCA and PMR and presented having lost the sight in one eye.I am a retired nurse so thought it was a detached retina!

I have had severe asthma and have moderately bad MS. I have a lovely life and enjoy each day to the full. However to the relevant matter.

My GCA/ PMR journey has been long and tortuous .I am on a tapering Pred regime when I started Tocilizumab injections mid March. Starting on 17.5 Pred., plus 125 mg Azothioprine . I have had beautiful ESR and CRP levels are shown on my weekly blood tests since starting the injections. I am down to 10 mg Pred and due to start the 9 mgs in a fortnight.

However because I have been on Pred continuously for about 15 years for the asthma. I have been told that there is no adrenal function after this number of years, the physiological dose I will need for life is about 6-7 mgs Pred.

I have a superb rheumatologist and incredibly, unbelievably a call from my GP on a weekly basis , discussing amongst other things, the previous weeks blood results.

Maybe I am so fortunate is because I live alone , and cope very well due to network of friends and family.

To end- thank you so much for such an incredible service, thank you for the amazing ambassadors..

So in essence 6 mgs is what to aim for if it has been confirmed by tests that there is no hope of the adrenals awaking. Sounds like Sleeping Beauty!!!

[SheffieldJane]

I really admire your glass half full attitude! 🥂

[Caroline2079 in reply to SheffieldJane]

Thank you so much for your comment.

It really feels lovely extended family belonging to this group, doesn’t it.

As a side issue, the doctors are rather interested. We know that a gene called interleukin 6 is very involved in the immune process, tocilizumab acts on this site. But what is of interest is all the conditions I have have a auto immune component.

My brother who is a researcher in Bristol University feeds me with a lot of information about GCA and it is a very exciting time in this field ( as long as you are not the sufferer!!) for rheumatologists. Much new research and new treatments. These monoclonal antibody therapies are proving very useful not only for us, but advanced cancers and my dear MS !!

I so hope, Jane, that you do not suffer too much from this most challenging of diseases.

[PMRpro Ambassador in reply to Caroline2079]

I believe that autoimmune disorders don;t come in discrete packages - I think it is a continuum and what label you get depends on symptoms they identify. You have Caroline2079 syndrome ...

Shame a few more rheumies haven't realised how exciting rheumatology can be - too many are obviously totally disillusioned with the clinical aspects.

[Hidden in reply to SheffieldJane]

So do I Jane...there are some amazingly brave people on this forum and Caroline is one of them. Makes me put my probs into perspective.

[DorsetLady PMRGCAuk volunteer]

If 6mg gives you a good quality of life then so be it…As you well know many of us are on a low dose of some medication that does just that.

[Caroline2079 in reply to DorsetLady]

You are fantastic DorsetLady. I love your incredibly good posts.I learn so much.

[DorsetLady PMRGCAuk volunteer in reply to Caroline2079]

🌸

[SnazzyD]

Sounds like a fair cop. Out of interest, at what level have you been when they have proclaimed your adrenal function to be defunct?

[Caroline2079 in reply to SnazzyD]

I was on 6 mg. I was on this dose w hen I lost the sight in one eye and raised ESR and CRP. Drs were a bit surprised that the Pred had not stopped the GCA in the first place.Shows what an aggressive disease it can be.

I remember the ophthalmologist saying “ we are now going to try and save the sight in the other eye”. That was scary

[PMRpro Ambassador in reply to Caroline2079]

I fear 6mg wouldn't hold PMR never mind GCA! I've heard this from doctors before - "YOu're on pred, you won't develop GCA": only if the dose of pred is high enough, why do they think the starting dose fr GCA is 40mg? And that is for patients without any jaw or visual symptoms.

[DorsetLady PMRGCAuk volunteer in reply to Caroline2079]

I had that comment -and I was on 80mg at the time!..and yes I was scary.

[SnazzyD in reply to Caroline2079]

Just a thought, I don’t think my adrenal function was up to much at all at 6mg as the dose was a bit too high still for the feedback to kick in. This is why my Endo doesn’t do Synacthen tests above 4mg. It improved at 4mg and even more by 1.5mg because the adrenal axis was being forced to work. If this is the lowest you’ve got to, I wouldn’t give up hope yet. For now that’s a moot point. Agree with PMRPro that it’s silly to say 6mg should be protecting you from GCA. Why do people have flares at 40mg then?

[Hidden in reply to Caroline2079]

Crickey, I'm about to embark on 6mg on 1 June. I've been slowly tapering since 2019. My regime now though is taper by 0.5mg per month. I only have the sight in one eye anyway, so very scary thought at 6mg this could happen. Did you get any signs of other symptoms before losing your one eye ? I too have, or rather had GCA. Mine were jaw claudication and tender head, that was all. 6mg with all the rest you obviously have taken surprises me it took your sight in one eye, I thought maybe the body builds up a response against sight loss when having taken Pred for so long.

Anne

[Grammy80]

So glad you posted and gave us all a hint of your positive life-to-the-fullest attitude!!! I'm a GCAer and just last Wednesday my rheumatologist said he thought I'd probably be taking a low dose forever, and that is ok with me. I'm down to 9mg and TCZ. You are a light....and I agree this forum and the folks on it are a treasure!! 💕

[Towdy]

Great post Caroline. I am also long term pred user due to Aspirin exacerbated respiratory disease & urticaria. 11years now

Varying medical opinions but plan to stay on 6 to 9mg long term & take precautions on bones, eyes etc. currently on 10mg for PMR with no steroid side effects or fatigue .lifestyle very active so they think 6mg may not be enough

Hope the MS behaves, my aunt had it. Great genes we’ve got!